For people faced with the enormous challenges that mesothelioma and other rare diseases bring, it can often feel like their voices go unheard. But, on Rare Disease Day – February 29th 2016 – patients, families, researchers, and supporters from around the world will unite in solidarity to raise awareness about rare diseases. Since 2008, the day has presented a valuable opportunity to educate our local and global communities about the everyday struggles of patients and to set goals for positive change.
2016 marks the 8th year that the United States has observed Rare Disease Day. This year’s slogan, “Join us in making the voice of rare diseases heard,” underscores the ambitions of organizers to reach a wider audience with their important message. The theme for 2016 is Patient Voice, which:
“Recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and caregivers.”
Organized by EURODIS, the European Organization for Rare Diseases, Rare Disease Day is observed each year on the last day of February. EURODIS is a non-governmental, patient-driven alliance of patient organizations, “the voice of 30 million people affected by rare diseases throughout Europe.” In 2008, EUORDIS partnered with the National Organization for Rare Disorders (NORD) to help sponsor Rare Disease Day in the United States.
What Is a Rare Disease?
The key to this whole awareness campaign is to first recognize what “rare diseases” are and to spread awareness about them. In 1983, the U.S. Congress passed the Orphan Drug Act (ODA) to spur the development of drugs that treat diseases affecting fewer than 200,000 people.
Why was this Act so crucial? Put simply, pharmaceutical companies are overall less willing to invest money into treatment regimens for diseases that aren’t going to be marketed widely and turn large profits – it’s just too costly. What the ODA did then, was offer financial incentives to companies that devoted resources to studying and treating rare diseases. Since then, hundreds of so-called “orphan drugs” have increased treatment options for patients with rare diseases.
But there remains, for many, a long road ahead. There are roughly 7,000 rare diseases affecting nearly 30 million Americans. The solidarity of Rare Disease Day provides an opportunity for these voices to speak together, to promote change that:
- Ensures that politicians continuously and increasingly acknowledge rare diseases as a public health policy priority at both national and international levels.
- Increases and improves rare disease research and orphan drug development.
- Achieves equal access to quality treatment and care at local, national and European levels, as well as earlier and better diagnosis of rare diseases.
- Supports the development and implementation of national plans and policies for rare diseases in a number of countries.
- Helps to reduce isolation sometimes felt by people living with a rare disease and their families.
In an effort to make these changes lasting, Rare Disease Day in the U.S. has set the goal of having State House Events in all 50 states.
Living with Asbestos-Triggered Diseases
Each year, doctors diagnose around 3,200 new cases of mesothelioma in the United States alone. Even though awareness about the risks of asbestos are better known, new cases emerge because it can take 20-50 years for symptoms to appear after exposure. Since the risk is life-long, it’s especially important to make sure that at-risk communities are aware and patients are getting the support they need.
Living with mesothelioma, asbestosis, or asbestos-triggered lung cancer is a tiring, often lonely battle for patients and their families. The ambassador for Rare Disease Day 2016, Sean Hepburn Ferrer, is no stranger to that fight. His mother, actress and dedicated philanthropist, Audrey Hepburn, passed away in 1993 from Pseudomyxoma Adenocarcinoma, a form of cancer which affects only one in 1 million people. Still, he finds strength in one of his mother’s quotes, “Alone we can do so little, but together we can do so much.”
As ambassador, Hepburn hopes to bring hope and change by unifying those who suffer from and are affected by rare diseases. He says:
“While 6,000-8,000 different rare diseases seem like an insurmountable amount, 60,000,000 patients, together with families, medical practitioners and support systems, and which today are coordinated by EURORDIS and NORD, are a power to be reckoned with.”
Rare Disease Day is an opportunity for those in the mesothelioma community to join its voice with those of others suffering from diseases that are all too often overlooked. Alone we can do so little, but together we can do so much.